Patient reported outcome measure

What is rheumatoid arthritis frailty?
The word frailty suggests a serious level of health vulnerability. In medical terms, frailty often describes a range of conditions in elderly people: “frailty comprises a collection of biomedical factors which influences an individual's physiological state in a way that reduces his or her capacity to withstand environmental stresses.”1 Frailty expresses...Continue reading9 Comments »Read more

No one wants complicated answers, of course. But some answers are complicated, with multiple layers or causes. Like Rheumatoid Disease and childhood hearing loss. Instead of differing experiences of patients being suspect, they should be valuable clues to answers we all seek.
Answers and more questions
The past few months have been a slow process of diagnosis...Continue reading10 Comments »Read more

Probably the RAW article most often referenced is Blood Tests for Rheumatoid Arthritis, part 2 from over four years ago. People need answers to questions like:
My blood tests show I’m in remission, so why do I still have symptoms?
My doctor said I tested negative for RA, but could I still have it?
What is the role...Continue reading18 Comments »Read more

Patient Experience and Rheumatoid Disease
This site has always been dedicated to “presenting the patient story in a way that may increase understanding of the disease by doctors and researchers” as one of its three goals. The Onset Story project has been an important part of that, both for patients and for healthcare professionals searching to...Continue reading18 Comments »Read more

Note! For more snapshots including the posters summarizing the PCORI workshop - click here.
This weekend I attended a PCORI workshop called Transforming Patient-Centered Research: Building Partnerships and Promising Models. I’ve watched some PCORI meetings in the past since they use live stream webcasts to provide transparency. Here are some of my impressions regarding the weekend...Continue reading11 Comments »Read more

Tiger and I left home for the PCORI conference today in D.C. in spite of the fact that many in the D.C. are evacuating from the area!
Schools were closed on the Space Coast due to Hurricane Sandy, dubbed #Frankenstorm. In Florida, Sandy wasn’t as big a deal as the half a dozen other hurricanes we’ve...Continue reading5 Comments »Read more

So often when I’m listening to a scientific presentation about clinical care for Rheumatoid Arthritis, I would do the face-palm head-smack, if my shoulder would let me. Depending on who can hear me, I mutter softly or wail sarcastically, “If it’s not done, does this matter?” One example is measuring RA disease activity, especially with...Continue reading43 Comments »Read more

In Part 1, we pointed out that patients and clinicians look at Rheumatoid Arthritis disease activity in different ways. Rheumatologists especially focus on joints, and actually particular kinds of joint activity. Patients face much more with regard to disease activity, as reflected in the post and comments page.
In Part 2, we looked at two specific...Continue reading59 Comments »Read more

This post was inspired by the article Patient Advocates: Flies in the Ointment of Evidenced Based Care by Jessie Gruman at Health Affairs Blog. Patient advocacy and evidenced-based medicine are both intimately entwined with several matters in rheumatological care, but first a word about flies.
Patient advocates probably are flies in the ointment, and there would...Continue reading35 Comments »Read more

Did you ever go to the store for milk and bananas? And come home with frozen pizza and ice cream? Sometimes I spend a couple of hours looking for something and discover something else that’s worth bringing back to you. That’s how I found this ten year old article about the dilemma of measuring Rheumatoid...Continue reading23 Comments »Read more

Rheumatoid Arthritis Is the Only Major Disease in Which the Patient Largely Informs the Doctor
A funny thing happened while we were at a poster session last week at ACR. The Georgia World Congress Center is like three 4-story shopping malls with a couple of theaters and secondary schools thrown in – it’s big. So, we...Continue reading19 Comments »Read more

Are patient reported outcome measures useful for Rheumatoid Arthritis?
Unfortunately, pain is invisible. I’ve fantasized that it should have a color so that it could be seen and measured objectively. However, pain is just as invisible as stiffness, weakness, and fatigue – the major symptoms of Rheumatoid Arthritis. How can we measure Rheumatoid Arthritis since its...Continue reading33 Comments »Read more

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